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Boston Globe
11-07-2025
- Health
- Boston Globe
‘Panic is for wimps': What do Trump's funding cuts mean for Boston hospitals?
The following is a lightly edited transcript of the July 10 episode of the 'Say More' podcast. Shirley Leung: I'm Shirley Leung. Welcome to 'Say More.' It's a uniquely challenging time for our nation's medical community. The Trump administration has set its sights on slashing federal funding for healthcare and research by tens of billions of dollars, which could be catastrophic for the National Institute of Health (NIH) and Centers for Disease Control and Prevention (CDC) funding is tenuous to say the least. Then there's mounting political pressure to restrict access to care for low income families on Medicaid plus care for at-risk health groups like transgender Americans and immigrants. So how are healthcare leaders navigating these uncertain times? Today we're bringing you a live episode recorded at the Boston Globe's Health Equity Summit. It was held in May at Cambridge's Sanofi headquarters. It's a conversation with Dr. Kevin Churchwell, CEO of Boston Children's Hospital. We discuss how major changes at the federal level are impacting healthcare workers and patient care in Boston, and beyond. Okay. Here's the show: Dr. Churchwell, thank you for being on 'Say More.' Kevin Churchwell: It's a pleasure to be here. Leung: So, Dr. Churchwell, can you tell me about that moment when you realized your year wouldn't go as planned? Churchwell: I think it's been my decade. So, usually that moment happens on a Friday, at about four o'clock when there is an announcement about reducing the facility's administrative rate for NIH funding to 15 percent. And you could imagine the amount of angst and just a bit of panic that occurred when that was announced. I tell my team, my phrase is 'panic is for wimps.' In pediatric critical care, you just can't panic in an environment like that. And so taking that was our mantra. We basically then said, 'Okay, what's the next step? What is going to happen? What does this really mean?' And it took a period of time. It takes that weekend to understand it and to understand what will be the next step in terms of things go to court, things get stopped, and then how do we deal with that moving forward. Leung: So when you heard about this 15 percent cap, how much funding is at risk then at Boston Children's? Churchwell: So, the first calculations for us would be, each year we would lose about $80 million. As you can imagine, you just can't find that on the street. And that would change just existentially what we can do in research, if that would go through from that standpoint. Leung: Can you talk about specific projects that won't get done if these cuts stick? Churchwell: Well, it's just not the projects that are happening now, but the new projects or the new opportunities that are just being held up right now. You know, research is not just about the present, it's about the future. And what we do at Boston Children's is continue to support that present future by finding and supporting the next investigators that have great ideas, that are looking at particular mechanisms of how sales work, diseases, et cetera. What that funding does is support those individuals to start that work that ultimately leads to treatments and cures. Ultimately, it leads to what we were talking about outside in terms of what's happening with the care of the individual with Cystic Fibrosis or the care of the individual with sickle cell disease. Leung: Can you talk about, just in your career, the progress made in terms of treating Cystic Fibrosis and if you could explain what the disease does and how it affects children. Churchwell: Absolutely. Cystic Fibrosis is a problem in how cells really process sodium and potassium electrolytes. That leads to a problem in how lungs clears mucus. As an example, it also leads to how the pancreas works and et cetera. It's a disease that for a long period of time, had a mortality. And what I mean by that is that the kids who had the disease knew that at some point in their life they were going to die prematurely. And so they really developed their life based upon that for a period of time, they would die in adolescence. We got better in terms of the treatment, and these children would sort of then have a life in their twenties and their thirties, but still, they knew that at some point their life was going to stop. Leung: It was a hard life too, right? Churchwell: It's a tough life every two weeks, every four weeks back in the hospital. With the research that occurred, first understanding the fundamental mechanisms of how cells work, ion transport, understanding the genetic defect in the disease, and then asking the question, 'Can we actually affect that defect?' You were talking 30 years of work, 20 to 30 years of work, which ultimately led to the development of drugs. There's a three-drug cocktail that 90 percent of the kids with Cystic Fibrosis can take, that has totally changed their life. It's phenomenal what we've seen, and it's due to that discovery that's occurred. Leung: And a lot of it was federal funding, right? Churchwell: Federal funding, plus foundation funding and Joe O'Donnell's work with Cystic Fibrosis locally here. It's just incredible work. It took a lot of dollars that needed to really fund that sort of understanding of the mechanisms and then the drug development. That was the relationship that we've had, this partnership with the federal government for 80 years, which has led to incredible discoveries across the board of medicine on all parts of science. Leung: You mentioned earlier that federal dollars support research, support the future. So when those dollars are cut, what are you most worried about that won't get done? Churchwell: I'm worried about who we will not be able to support these individuals who have these great ideas. And I'm worried about how they will decide, 'I don't think I'll go into medicine or biological research. I think I'll be a computer scientist because that's where the money is.' These are brilliant individuals. They could probably do anything they want in life. These individuals, if we can support them, change the world, change individuals, change our children and give them a real future. And that's what I worry about. Leung: I want to ask about a specific Boston Children's program. It's the first pediatric and adolescent transgender health program in the country. President Trump, through a series of executive orders, has stripped away many rights of trans and non-binary individuals, including defunding gender affirming care for youth. Even before Trump was elected, there were some questions about paying for this type of care. And now he's really doubled down with threats of withholding federal funds and other penalties. So do these headwinds make Boston Children's rethink how you provide care to these patients? Churchwell: They've not created an environment where we're rethinking. We are totally committed to the care of all of our kids and the goal of any pediatric hospital, especially Boston Children's Hospital, is to work to create the best future for that child, so our gender affirming care program is a great example of that. The important part that I would stress to everyone is that these kids have a real issue that they're grappling with, that is affecting their life from a medical, physical, and mental standpoint. And our ability to intercede and support them has been transformative for that child, for that adolescent, for that young adult that they can see a future for themselves. And so our commitment to that is straightforward, has not wavered, and we have committed our support to our gender-affirming care program. In that regard, I will tell you that our state leaders have been incredibly supportive. Our governor has been incredibly supportive. Our attorney general has been incredibly supportive of the work that we're doing because it's work that really supports that individual child, that family. And so we continue that work because we know that there are headwinds. And, we've seen this across the country. A little known fact is that, we see a lot of kids, families from other states now because they can't get care in their state, so they're coming to us, in that regard. There will be, and there are going to be, challenges moving forward. We're trying to be very smart about it. We're working to make sure we're supporting our caregivers in that regard, in the care and in the work that they're doing. Leung: Do you depend on any federal funding or government funding for this type of care? What do you do if that funding disappears? Churchwell: Right now, the support and care of those kids really comes from either commercial insurance or Medicaid. And that's where the rubber may meet the road there, in terms of decisions made about Medicaid funding or how the commercial payers decide about that support Leung: As a black doctor and now the hospital's CEO, you've long championed health equity. If DEI programs are to be rolled back, do you think they will be hard to re-implement? Churchwell: That's an important question. I've never seen DEI as some separate thing. It's a separate program that sort of sits out there, as opposed to integrating it into what we do every day. And that's always been my goal and that's what I've always tried to help lead in terms of what we've put in place. And so given that, we will continue to do the work that we have done, in terms of providing an environment where every child gets the best opportunity for care that they can receive at our hospital. Part of that is the work that we've done in diversity, equity, inclusion, and you can call it another name. Whatever you want to call it, it's integrated in what we do, and it's for every child. To me, the discussion kind of gets lost when the discussion tries to pit it as something that's different or wrong, as opposed to, 'No, it's the ability for us as a society, us as a children's hospital to provide the best care. The most optimal care for every child that we see.' Now, what does that mean in reality terms? Well, we work to try to understand where the child and the family are coming from. And in doing that, we're better able to actually provide care for the child, who they interact with, how the interaction occurs, how we are viewed from their standpoint. You know, if you walk into our children's hospital and you stand in the lobby, it's always a great thing. I always encourage everybody to do that because what you'll see is the United Nations. You'll see everybody from all parts of Boston, the New England region, and all over the world. So the question is, given that, how can we best provide the most excellent care if we don't reflect who they are and we're able to pull from the entire range of talent that's out there? And so that's what we're trying to do and that's how we've integrated it into what we do. That's how I view it. We'll continue to move forward. Leung: So in higher education, we're seeing some presidents, like at Harvard University and Princeton University, stand up to the Trump administration over proposed funding cuts. Do you see hospital CEOs doing the same thing? Churchwell: Yes. I'll say that we believe in what we are doing and the importance of it. The issues that our colleagues are facing, our brethren are facing in the university setting, those issues are profoundly important and what Harvard has done is so important, and it is going to be that question that has to be answered, in terms of the ability for universities to teach and to educate in a way that is across the spectrum. It has never been the question for me who's right and who's wrong, that you shouldn't talk or they shouldn't talk. Everyone should be able to talk of course, and present views and have the discussion because that's how we learn. That's how we were able to move things forward. And to preserve that ability for our universities to do that, I think is profoundly important. Leung: At Children's, we think of you as seeing patients, the clinical side, but you also do a lot of research. Often you work with the universities, too. Your fates are kind of tied together. So I was just wondering if you could talk about when we read about what's happening at Harvard or Massachusetts Institute of Technology (MIT) there are layoffs, they're pausing research, there's a hiring freeze. What is happening at Boston Children's Hospital? Have you had to do any of that? Churchwell: What we've done is take a very measured approach around what's happening. We have paused what we call our 'capital projects.' These are major projects that run into the 500 million range because they are associated with what we call our 'planning exercise,' a 10-year capital plan with the assumptions that we've made, that have been very consistent about where dollars would come from, like from the federal government, so that we can move forward. So what has been created is an incredible instability. You can't plan right now. I've told our folks, our board, that I think the next six to eight months will clear that fog. We call it a 'fog,' in terms of the rules of the road here. And given that, we will then figure out how we can move forward. But right now we've paused those major things. We've paused any major recruitments. We've also really maintained that those that are part of Boston Children's Hospital, we are supporting, especially our research community. How do we bridge them, as we get through this fog that we're dealing with right now? Leung: When we were talking earlier, you said you have about 14,000 to 15,000 employees, right? At Children's, it's quite a big enterprise, between clinical and research, so anxiety must be really high among your employees right now? Churchwell: Yes. Shirley: How do you talk to them? What do you say to them during these uncertain times? Churchwell: Well, we talk a lot and we try to do it in multiple forums to try to answer their questions. We've tried to be very transparent. Every third answer is, 'I don't know. I can't give you an answer.' But, that's okay. It's more the ability for them to ask the question and to actually know that we're thinking about it. What our promise to them is that we will continue to follow up and continue to have that dialogue. And so we are doing that on a regular basis in as many forms as we can: email, town halls, Zoom, and et cetera to try to keep everybody up to date and try to let everyone know where we are and what's going on as we go through this. Leung: Is it like another pandemic for you? Churchwell: It's like the pandemic. It's kind of like Groundhog Day. I thought I was not gonna hear Sonny & Cher, but I keep hearing Sonny & Cher. Leung: This has been a heavy conversation. It's been like this all day long at the Health Equity Summit. So I was just wondering, in light of everything that is going on, what gives you hope during this time? Churchwell: Let's all remember the arc of justice, and let's remember that we live in a country that has a phenomenal history, but an important history. It's never been just roses and incarnations. The work to continue to move forward has been important work, difficult work, but work that we all are committed to continue to move us forward as a country. My mom was born in 1931. My dad was born in 1917, so my dad went through two world wars. He was born at the end of World War I, he went through World War II and I, and I'll tell you, he didn't volunteer. He then started his work as a newspaper man at a daily southern newspaper. Leung: I didn't know that. You buried the lead. Churchwell: I buried the lead. He's actually in the Smithsonian Institution. So looking back on their life, what they went through, I missed it. I missed it just by a few years in terms of colored bathrooms. Now I have brothers that are eight years older than I am, and they went through it. And so just to appreciate the arc of our country. It's never been easy. It's been hard. You keep moving forward and I think that we have to continue to keep moving forward in this piece of work. Leung: Dr. Churchwell is the CEO of Boston Children's Hospital. Thanks for joining us on 'Say More.' Listen to more 'Say More' episodes at Kara Mihm of the Globe staff contributed to this report. Shirley Leung is a Business columnist. She can be reached at
Boston Globe
03-07-2025
- Politics
- Boston Globe
Fourth of July vibe check
The following is a lightly edited transcript of the July 2 episode of the 'Say More' podcast. Shirley Leung: I'm Shirley Leung. Welcome to 'Say More.' The Fourth of July. What does it mean to you? This week it's America's birthday, a day that recognizes the signing of the Declaration of Independence, a blueprint for democracy. It's a celebration that comes around every year, but this time it feels different. To mark the Fourth, Globe Opinion asked readers and community members to reflect on how it feels to be an American today. Take a listen. Reya Kumar: Hi, I'm Reya Kumar. I was born and raised in California and live out in Boston now where I went to college. Every Fourth of July, I write an Instagram post about how I feel about America that year. It's become my annual tradition, a way to wrestle with my complicated relationship with my American identity. When I think about America, I'm caught between frustration at our failures and an unshakeable hope for what this country has the capacity to be. Even when I'm sorely disappointed in our leaders and systems, I could never imagine leaving. This country is too much a part of who I am. Even when it breaks my heart. I consider myself a patriot, but my patriotism isn't about blind allegiance to symbols or refusing to acknowledge our failures. It's about believing in what we could become. When I see the ongoing fight for voting rights, the persistence of systemic racism, or the rollback of reproductive freedoms, I don't see reasons to give up on America. I see reasons to fight harder for it. This 4th of July feels different. We're celebrating independence from a king while our president chips away at the foundations of our sacred democracy. The stakes feel impossibly high. That's exactly why I refuse to write off this country. Being American means holding two truths simultaneously, loving your country enough to demand better from it, and believing that better is possible. Jon Dickinson: My name is Jon Dickinson and I live in Portsmouth, New Hampshire. My American identity is rooted in self-reliance, perseverance, work ethic, and an ingrained desire to accomplish something every day. My first memory was being one of three kids under five, a dog, and my parents all gloriously crammed into an 800-square-foot rental. My parents worked multiple jobs to make ends meet. I was expected to be courteous, hold a job, save money, and pay for college. Some say the 'American Dream' is dead. I don't buy it. Too many are distracted by media outrage, virtue signaling, and curated personal narratives. Opportunities exist for everyone but are realized only when one holds oneself accountable for their own success. To me, being American means betting on yourself, taking risks, and not waiting for perfect conditions. It's the freedom to try and fortitude to persevere until you achieve your goals. Elliot: Hi, I'm Elliot. I live in Hampshire County in Massachusetts. How does it feel to be an American this Fourth of July? It feels terrifying, first and foremost, but I try to make sure that fear is pushing me closer to my community rather than alienating me from it. I'm the child of immigrants who were lucky enough to be able to come here legally, even though now that doesn't feel like a guarantee of anything. My grandparents came here from Latin America with their two young sons and truly lived the 'American Dream.' I've heard the story of how my grandparents were able to retire from the proceeds of my grandfather's patents after he was able to go to school and become an engineer. Now, I worry that my 93-year-old grandmother will be stopped and something about her– her accent, the way she dresses, the color of her skin or hair– will give some power-hungry bureaucrat the excuse to say she doesn't belong. I'm also a transgender nurse who works in transgender healthcare. I spend every day reassuring my patients that we're still here, still providing the life-saving care they need as long as we possibly can. Some days I live in panic that America can't come back from this. At least not an America I can be proud to belong to. Most days I try to make my little pocket of America a place that lives up to its values for once. That looks like volunteering for community meals, honking support for the protestors in the picket lines, comforting my partner when U.S. Immigration and Customs Enforcement (ICE) shows up at the preschool where she teaches, doing something, doing anything, doing everything I can to feel like there could be good here in this place despite the evidence. Mayra Balderas: Hi, my name is Mayra. I am from Mexico. I came to the United States in 1988. I have been living in Chelsea since then. I became a citizen in 2000. Now, I'm on a school committee in Chelsea. I believe that where I was born is my first place, but also I grew up here, so that means that I have more American than Mexican. People who really come here to make a difference and to become somebody, meaning like go to school, have a great job, I feel like we need to support those people. When [you become] president, you swear that you are gonna take care of your constituents. You don't expect that people are going to have this behavior. The way they're behaving and the way they are treating the constituents and not respecting our rights, that makes you feel like they don't want you here, even though you are a citizen. Only because they see your color and you are not white. I'm not gonna give up, myself. I feel like if everybody fights for justice and makes a big voice and gets together and says, 'No, we don't like what they're doing,' I think we can make a difference because this is not okay. Sidhi Dhanda: My name is Sidhi. I'm from Hopkinton, Massachusetts. I'm not a proud American. I can't be, not while voting rights are rolled back under the guise of security, freedom of speech and science are under attack, and there is the ever looming threat of the end of democracy. But I am a grateful American. There are a few places in the world where someone like me, the daughter of a single immigrant father with a funny name, would've had the opportunity to live a life not defined by those circumstances. The place my family comes from, India, a country I love deeply, might not have seen my story the same way, but here in the U.S. it has not come close to defining me. I just finished my first year at Harvard, an opportunity I likely wouldn't have had if I was born elsewhere. Right now, it's hard to feel pride in a nation making so many painful choices. So no, I'm not a proud American, but I am a grateful one. Michael Barbalat: My name is Michael Barbalat and I live in Newton, Massachusetts. My parents and grandparents came to this country from the Soviet Union. When they arrived, they didn't have job guarantees. They didn't have a plan. They didn't even have much English, but they believed America would give them a chance to start again. And it did. Even as a kid, I understood that being here meant being able to speak your mind, choose your own path, and live without fear. For me, being American means having the freedom to think for yourself. It means being able to build your life in a way that feels right to you, without having to follow a predetermined path. It's not always easy, it's not promised, and it's definitely not perfect, but there's something unique and amazing about the idea that in this country, your future is in many ways up to you. Ian Thomson: My name's Ian Thomson. I live in Cape Town, South Africa. Born abroad to American and Colombian parents, raised across cultures and continents, my identity was never simple. At 18, I consciously chose America, not out of obligation, but out of admiration for its core values. My commitment deepened when I joined the Marines, eager to embody and defend the principles that drew me: integrity, equality, and the constitutional promise of justice for all. I finally felt that my Americanness was unquestionable when I pinned on the 'Eagle, Globe, and Anchor' for the first time at the end of Officer Candidate School, where our motto was, 'Ductus Exemplo,' imploring us to lead by example. That symbol, and those words, represented much more than military service. They stood for a nation's deepest ideals, ideals that I was prepared to uphold and represent internationally even at personal risk. Today, however, my American pride is tinged with betrayal, not solely by leaders acting in self-interest, but by my fellow Americans whose silence and acceptance of falsehoods have allowed dangerous narratives to flourish. Recent events remind us of how easily power cloaks itself in moral pretense. History warns us that empires rise through shared virtue and then fall into decadence and division. I feel like America is nearing this critical juncture. This July 4th, let's reaffirm our commitment to integrity. Let's preserve a nation worthy of its promise. Because it's not solely the task of those wearing the uniform, it's the duty of all Americans who believe that leading by example with honesty and accountability is what truly makes us free. Leung: You can check out Globe Opinion's full package marking Independence Day at Thanks for listening. Happy Fourth. Listen to more 'Say More' episodes at Today's episode was produced by Katelyn Harrop and reported by Rebecca Spiess. Kara Mihm of the Globe staff contributed to this report. Shirley Leung is a Business columnist. She can be reached at
Boston Globe
27-06-2025
- Boston Globe
Ten years after tragedy, a historic Black church lives on
The following is a lightly edited transcript of the June 26 episode of the 'Say More' podcast. James Dao: I'm Jim Dao. Welcome to 'Say More.' Kevin Sack is a longtime reporter who spent much of his award-winning career writing investigative and long-term narrative pieces for The New York Times. Then in 2015, he helped cover one of the most horrific massacres in recent US history, the killing of nine parishioners who were attending Bible study at the Emanuel African Methodist Episcopal Church in Charleston, South Carolina. The story launched Sack on what would turn into a 10 year project to document the history of Mother Emanuel, one of the oldest and most influential black churches in America. The book, which is out now, explores stories of the enslaved and emancipated black people who created and sustained the church against all odds in a bastion of the confederacy. It is also an extraordinarily detailed history of black Charleston from before the Civil War, Reconstruction, Jim Crow and the Civil Rights Movement. The book also grapples with eternal questions of forgiveness and resilience a decade after this terrible tragedy. I'll just note here that Kevin and I are old friends from our days at the New York Times. Kevin Sack, welcome to 'Say More.' So your book opens almost exactly a decade ago on June 17th, 2015, with a mass shooting at a church. Tell us about that church and what happened that night. Kevin Sack: The church is Emanuel African Methodist Episcopal Church. It is the oldest AME church in the Southern United States, and has a remarkable history that goes back over 200 years. Now, it was first started in around 1817-1818 after really a subversive act, a withdrawal of thousands of African American Methodist from white-controlled, white-governed Methodist churches in Charleston to form something known as the African Church, which was somewhat short-lived. Then it reformed as Emanuel in 1865 when AME missionaries followed Union troops into Charleston as the Civil War was closing and started this church back up. It's called Mother Emanuel because it then seeded churches all over South Carolina and eventually the South. On the night of June 17th, 2015, 14 individuals, most of them adults but several children, were at Bible study. It was a Wednesday night. That's when bible study always takes place. This night, the Bible study was delayed by an hour or so because there had been a business meeting beforehand called a quarterly conference. Because it's going late, a lot of folks actually left before the Bible study. This could have been a much more horrific incident, but 14 remained, most of them in the fellowship hall itself, where the Bible study was taking place. At some point, the door opens up and a man named Dylann Roof, 21 years old, walks in. He's got a waist pack around his midsection. And, he's invited in, welcomed by the ministers and takes a seat. He is handed a study guide and a Bible and sits silently for roughly 45 minutes through the Bible study until everyone's eyes are closed in benediction, at which point he unzips the waist pack, removes a Glock and starts firing somewhat indiscriminately. He starts with the pastor, shoots him multiple times and then proceeds to walk around the room as old church ladies are diving under tables and assassinates them one by one. There winds up being several survivors. One of them, Polly Sheppard, is confronted by the killer. She's under a table and she looks up and sees the barrel of his gun. Pointing at her face, she's praying. He asks her if he has shot her yet. She answers 'No' and he says, 'Well, I'm going to leave you here to tell the story.' The other adult survivor in the room was Felicia Sanders, who was there with her granddaughter and her son. Her son was in his mid twenties, a recent college graduate. He's already been shot, and she is hugging the granddaughter so tightly under the table that she thinks she might suffocate the child. Dao: Wow. These were eventually categorized as hate crimes. Do I have that right? Sack: That's right. Dao: This person, Dylann Roof, self-described as a white supremacist and quite proud of that. Sack: Correct. This was his intent. He made it exceedingly clear, both as he was firing and in his initial interview with the Federal Bureau of Investigation (FBI) after he was arrested the next day, that his purpose was to incite racial strife. What he really wanted was to incite some sort of race war. Dao: Did you ever talk to him or have any sort of significant contact with him and did you learn anything more about him as a person? Sack: Yeah, well, I covered his trial which was immensely frustrating for those of us who had hoped that it might provide some insight into who he was and how he had developed his white supremacist views. And it was deeply unsatisfying in that way because Roof, you may remember, wound up hijacking his own defense. He was intent on demonstrating that he was purposeful that night, that this had been premeditated and planned, that he wanted it to be known that he was a zealot, not a lunatic. And so he took over his own defense for the explicit purpose of denying his own lawyers the opportunity to present psychiatric evidence that might persuade even a single juror that he did not deserve the death penalty. In addition to watching the trial and getting some sense of him there, we also exchanged a few letters. He was on death row at this point, as he remains in Terre Haute, Indiana, at a federal penitentiary. He's now one of three federal death row inmates along with the Boston Marathon bomber and the Tree of Life Synagogue shooter in Pittsburgh. In these letters, I was seeking very specific answers to specific questions about the timeline of the evening, about his preparation, about what he understood about Emanuel and its history going in. I think he saw the exchange more as an opportunity to exert power in a new relationship. There was lots of antagonistic banter back and forth. He did acknowledge once again that he was utterly remorseless. Dao: I wanted to get you to talk a little bit about the church's pastor, Clementa Pinckney, who did die. He sounded extraordinary and charismatic, both as a minister and a politician. Sack: He was a remarkable prodigy, both in the church and in politics. He was called to preach at age 13 while walking through his childhood chapel in Ridgeland, South Carolina. He says he literally heard the voice of God calling him to preach, needless to say, took it quite seriously and acted upon it. He was known as a kid for wearing a suit and carrying a briefcase to middle school. He was that much about business even at that age. Then he winds up running for and winning office to the state legislature. He became the youngest African American to ever win election to South Carolina's legislature. And at the time of the shooting, he was serving his fourth term in the state senate as a Democrat in Republican, South Carolina. Therefore, he didn't have huge influence in the general assembly, but certainly advocated with great vigor for his district, which was one of the most poverty stricken in the state. Dao: I'm gonna ask you to now jump back in time. This is a very old church, dates back to the heart of the Confederacy when Charleston was a key center for the slave trade. The fact that free men and women, as well as I think slave parishioners could pull together the beginnings of this church back in that pre-war era is kind of a miracle in a way. Sack: It was just an incredibly bold act for the times, which again was around 1817 or 1818 when they withdrew from white Methodist churches and formed their own congregation. The leadership of that effort was from free people of color, but the enslaved were the majority of the membership. And, so yes, when the church forms the white population of Charleston, the white leadership of Charleston instantly sees it as a threat. There are mass arrests and jailings. The church's leaders are jailed and do some time. Then in 1822, there was an insurrection plot in Charleston. It's come to be known as the Denmark Vesey Conspiracy, named for the free person of color, a carpenter who actually had bought his way out of slavery after hitting the lottery. And Vesey, extensively organizes this plot. It's uncovered before it happens, and scores of men are arrested. Thirty five wind up being led to the gallows after trial and hung and almost half of those, I think 17 of the 35 wind up having some sort of association with the church. So in my view, it almost felt like the church itself was on trial and that they were really the target of the investigation that the authorities initiated. Because I think the place was seen as such a threat in the aftermath of all this. A month after the trials end, the church is dismantled board by board under order of the authorities and the leaders of the church are exiled under threat of criminal prosecution. Dao: Wow. So my sense is that the Denmark Vesey affair really kind of set the church back. It was harshly repressed for years and then you have the Civil War which then is an opening, right? The church can really sort of emerge during Reconstruction. Is it then sort of like a steady path of growth toward the civil rights movement? And the church as you came to know it in 2015? Sack: Yeah, I think it's very much a two steps forward, one step back kind of progress. And when you look at the church's history over time, it is very much one of suppression and repression followed by resistance. We see that all the way through 2015 when this white supremacist walks in the door and takes out the church's leadership and response. There has been resistance of various kinds both communal in terms of the way that the city responded and within the church and within the hearts of members, including any number who found a way to forgive this remorseless killer. And I argue in the book that that in itself is a form of resistance. Dao: We're gonna take a quick break and we'll be back with Kevin Sack. Kevin, you just mentioned the theme of forgiveness. As you know, I was an editor on the National Desk of the New York Times at the time of the Mother Emanuel shootings and I remember being shocked when at a nationally televised bail hearing for Dylann Roof, several relatives of the victims said they forgave him for his despicable violence. Tell us about your reaction to that stunning moment of grace and what did you learn about why those families said what they said? Sack: It really drove this whole exploration to some extent, what happened in the courtroom that day. Because yes, these five family members got up and expressed forgiveness of one form or another. They weren't all identical. Some went further than others. And in fact, even the night before, there had been a memorial service for one of the victims, Sharonda Singleton, and afterwards her son, Chris Singleton, an incredibly impressive young man, was asked by a British TV reporter how he was feeling. And he's standing next to his sister Camryn at the moment, and he says that there's nothing but love from our family right now, and we've already forgiven him. Now, none of the folks that spoke the next day had heard that or seen that, they didn't even know they were gonna be asked to speak at this bond hearing or afforded an opportunity by the judge to make a comment or two. And when I've interviewed all of them, they will tell you that it was utterly unpremeditated, unplanned, spontaneous. They describe it in mystical terms. It was 'God talking.' They were merely the vessels. Like everybody, I think I was simultaneously awestruck and befuddled by this. It seemed like the purest expression of Christianity that any of us had ever seen, much less imagined. I wanted to know where it came from. I thought about it and spoke to theologians and pastors. It occurred to me that what was really going on here was a form of release, because when you think about it, how else can you avoid being eaten alive from the insides by the fury and the rage and the insult? And so in that way, it seemed to me that forgiveness really was its own form of resistance. It was a way to reclaim agency by people who had been robbed of it, by this killer. The one thing that could not be taken from them was their ability to forgive. Dao: Talk a moment about the opposite view that you encountered in reporting out and researching this book. Clearly there were people within the church, within families you pointed out, and certainly within the African American community around the country who were sort of shocked by this and maybe not pleased, I guess would be fair to say. Could you describe that? Sack: Yeah, there are plenty of folks, including some of our brightest writers who asked in columns and essays immediately after this happened. 'Why is it always on black people to forgive? Why is it on them? They're not the problem here.' There certainly are family members who do not in any way forgive and would like to see Roof executed. And there are others who are frank about them being on a journey. And that path to forgiveness is not necessarily a direct one or an immediate one. They'll tell you that it sure would've helped a lot if he had shown some remorse. But it's very difficult for many people, and I think I'm one of them, to relate to that kind of grant of forgiveness for somebody who's not asking for it. Dao: So obviously you spent a lot of time in Charleston and then eventually moved there. You live there now. Could you talk a little bit about how the City of Charleston grappled with this in the aftermath and is it over this yet or is it still continuing to really shape that city now? Sack: Yeah, I don't think it'll ever get over it. It was a defining moment for the city in any number of ways, and what's happened in the last decade has been really interesting on a number of fronts. There were a variety of symbolic, but I would argue extremely meaningful, gestures made. In the aftermath of the shootings, the one that everybody remembers is the Confederate flag, that had flown either above or outside the state capitol in Columbia, South Carolina since the early 1960s as a direct affront to the quarter of the state's population that's African American, that finally came down. It took the assassination of a state senator to make it happen, but the Republican governor of South Carolina, Nikki Haley, at the time, and the Republican dominated legislature did finally move to bring the flag down. I think that mattered. It also mattered that the statue of John C. Calhoun, the great slavery defender, which had towered over Marion Square, Charleston Central Plaza for generations, again, as very much as a felt insult to those who walked beneath it, that was brought down by order of the mayor and the city council. On the fifth anniversary of the shootings, the city issued a resolution, apologizing for its role in slavery. Forty-six percent of all enslaved Africans who disembarked in North America, did so in the Port of Charleston. And interestingly, it was not a unanimous vote. There was considerable dissent. There are two pieces of legislation put before the general assembly, and in Columbia, that have gone nowhere. One is a hate crimes law. South Carolina is now one of two states without a hate crimes law. It was one of five at the time of the shootings. Bills have been introduced every year and have gone nowhere. There was also legislation, and still is legislation, both on the federal level and the state level to close what became known as the Charleston Loophole, which was the short background check period for purchasing a weapon, which allowed Dylann Roof to buy his gun despite a prior drug arrest. So those things have gone nowhere. I'm regularly asked whether I think Charleston is a different place now than it was before, and I do think there was a Charleston before 2015 and a Charleston after 2015, much the same way that there was a New York before and after 9/11, and I would assume a Boston before and after the marathon bombing. And I think it's a softer place. I think it's more self-reflective about race in particular. And I think a lot of conversations have started, that would not have happened beforehand. I know that I've been part of many of them. Dao: So you made this transition from being a newspaper reporter to being a historian, from covering news stories to spending lots and lots of days in archives. And you've devoted 10 years to this project, which has a remarkable result. What do you think you've taken away from this experience? And how are you thinking about things going forward from here? Are you gonna remain a historian? Sack: It might be a slight overstatement to call me a historian at this point. I remain a journalist with an interest in history, but I've certainly gained a lot of respect and a certain amount of practice, I guess, at the historian's craft. It's very different from journalism. I mean, yes, I spent lots of time in musty archives going through old bound volumes and, I think that we, as journalists, need to do more of this. I recognize that we don't often have the time or resources or capability to do it, and that's where nonfiction writers and historians do and should step in. But it was remarkable to me, how much wrong history I found and yeah, obviously what happens is, it gets written and then it gets repeated and it eventually solidifies into fact, or perceived truth, whether it is actual truth or not. Dao: Kevin Sack is author of Listen to more 'Say More' episodes at Kara Mihm of the Globe staff contributed to this report. James Dao can be reached at
Yahoo
20-06-2025
- Entertainment
- Yahoo
How to shoot 4K video on iPhone just like Danny Boyle did for '28 Years Later'
I have a confession: 2002's 28 Days Later was the movie that sparked my obsession for zombies during my teenage years. I loved that movie, and so I'm dying to see the latest chapter, 28 Years Later, when it hits theaters on June 20. A lot has happened since director Danny Boyle and screenwriter Alex Garland's original flick came out, including the launch of the iPhone in 2007. When I first saw 28 Days Later, my cell phone had a retractable antenna. For the sequel, Boyle actually used iPhones to help make the movie. As Boyle recently told Mashable Entertainment Editor Kristy Puchko in an interview for our video podcast Say More, the director deployed iPhones shooting in 4K video mode for pivotal scenes in the movie. (Boyle isn't the first director to use iPhones while making feature-length movies, from Sean Baker's Tangerine to Steven Soderbergh's Unsane.) Featured Video For You Say More: Danny Boyle reveals the tech and origins of '28 Years Later's most shocking moments In the behind-the-scenes photo below, you can see a custom-made camera rig featuring 20 iPhone 15s, which was used to shoot "bullet time" scenes in 28 Years Later. As Boyle told Mashable, there are actually distinct advantages to shooting movies with an iPhone. "They're lightweight. They do now record at 4K, which, when you make your own videos, you have to put a special setting in to make it 4K because otherwise your cloud storage would be just ginormous for every little video that you made," Boyle said. "But they allowed us to visit places, remote places in the UK, with a very light footprint." Behind the scenes of "28 Years Later." Credit: Sony Pictures So, while you might not have Boyle's plethora of devices or a custom-built rig, how can you shoot in 4K video mode on your own iPhone? It's actually incredibly easy. SEE ALSO: Watch Stormzy's short film 'Big Man' shot on iPhone 16 Pro Essentially, the key to shooting 4K video on iPhone is activating it in your device's settings. The precise steps might vary depending on the type of iPhone you have, but in general, it's a simple process. By default, your iPhone usually shoots HD video (1080p) at 30 frames per second. On my iPhone 15 Pro, I can change my video settings in the upper-right corner of the Video mode. Look for symbols that say "HD" and "30." The HD version of me. Credit: Timothy Beck Werth / Mashable Do I look more or less handsome in 4K? Don't answer that. Credit: Timothy Beck Werth / Mashable By tapping on "HD," your camera should switch to "4K" mode instantly. On the iPhone 15, you can also update the frame rate, choosing from 24 fps, 30 fps, and 60 fps. The higher the frame rate, the higher the video quality and the smoother the motion in the video. And if you have an iPhone 16 Pro or Pro Max, you can jack those settings all the way up to 120 fps. Be warned, 4K video files are "ginormous," as Boyle put it. How large? According to Apple, one minute of 4K video at 60 fps will be 440 MB large. Your efforts will also cost you precious battery life, so plan accordingly. Save this video mode for special occasions, such as when you're filming the long-awaited sequel to your 2002 horror masterpiece. For other advanced camera settings, go into your iPhone's Settings, select Camera, and select Record Video. There, you can toggle HDR video on and off, lock white balance, and make other adjustments. Credit: Timothy Beck Werth / Mashable Credit: Timothy Beck Werth / Mashable And that's it. Apple makes the entire process relatively painless once you know what you're looking for. So, what's stopping you from making your own legendary horror film trilogy?
Boston Globe
20-06-2025
- Health
- Boston Globe
Introducing ‘Endless Thread'
Follow 'Endless Thread' wherever you get your podcasts. The following is a lightly edited transcript of the June 19 episode of the 'Endless Thread' podcast. Shirley Leung: Hi, this is Shirley Leung, host of the 'Say More' podcast. I want to share something special with you this week. It's an episode of the podcast 'Endless Thread,' from our friends at WBUR. In this episode, you'll hear the story of Brooke Eby. She was 33 years old when she was diagnosed with amyotrophic lateral sclerosis (ALS), a neurodegenerative condition commonly known as Lou Gehrig's disease. As ALS progresses, you lose the ability to walk, chew, and eventually breathe. Patients are usually given two to five years to live, although younger patients often live for longer. Brooke has been documenting the progression of her disease on TikTok, often with laugh-out-loud humor. Ok, here's the show: Ben Brock Johnson: Brooke. Thank you so much for hanging out with us. Amory Sivertson: This is all prerecorded, so you may hear us stumble over things, questions that we wanna ask you, in which case we'll just do them again. Feel free to do the same if you start an answer and you want to say it differently. Johnson: And you're allowed to swear because it's a podcast. Brooke Eby: Noted. Sivertson: If that's your jam. Eby: It's actually like my New Year's resolution to do it less. So I'm trying not to. But like, I feel like that's such a cliche New Year's resolution that never really sticks, you know? Sivertson: No, I don't know anyone who's trying to swear less. I think in these times people are swearing more. Eby: Yeah, it's the inverse, perhaps. I'm Brooke Eby. I'm currently in Florida. I'm here for the winter, so right now it's like 80 degrees, which sorry if you guys are in the Northeast. I'm in Maryland for the summer, so I used to be in Maryland year round, and now that I live with my parents, I get to just mooch off of their snowbird lifestyle. Sivertson: Brooke Eby is 36 years old. Until recently she was living alone with her dog, Dr. Draymond Green, named for the basketball player Johnson: Last fall, Brooke and Dray moved in with Brooke's parents who mostly live in Maryland, but make like geese in the winter and head south. Brooke did not take the decision, to use her word 'mooch off' her parents, lightly. First, she consulted her over 200,000 followers on TikTok. Eby (clip from TikTok video): I need advice, people. Johnson: In this TikTok video from last summer. Brooke is outside. She's talking into her phone, which is positioned below her face. It has that look of an impromptu FaceTime call from a friend. Eby: I just need reassurance. Maybe I just need someone cheering me on that this is the right thing to do. Or like stories and pep talks of moving back in with your parents at the age of 35 is okay. This is a big regression feeling, so I don't know. I need reinforcement. Help me. Johnson: Brooke sent this message out to her nearly 200,000 followers at the time, more than 1,700 people commented. Sivertson: There was nary a negative response in the bunch. They were all like, 'It's a reconfiguration, not regression, and save money.' Johnson: Brooke has a lot of followers, thanks in no small part to her humor, which can be pretty edgy. Here's her doing a standup set for a crowd. She's joking about people who have Lou Gehrig's disease, also known as ALS. Eby (clip from comedy show): I wanna be clear, Stephen Hawking is an absolute legend, but did he make ALS cool? Johnson: Brooke's standup was a sit down affair because Brooke's in a wheelchair. For the past three years, Brooke has been living with a terminal diagnosis. And through almost all of it, she's been posting on TikTok. Eby (clip from TikTok video): What if I could walk and move again and I just became like an insufferable dance TikToker? My top is Old Navy. My pants are Amazon. My headband is Lily and my Life Alert Necklace is Sky Angels I've been on the exposing-people-faking-diseases-for-attention side of TikTok lately. I gotta say I'm a little offended that no one has accused me yet. Johnson: I'm Ben Brock Johnson. Sivertson: I'm Amory Siverston and you're listening to 'Endless Thread.' Coming to you from WBUR, Boston's NPR. Johnson: And today we talked to Brooke about making jokes through hard times. Brooke was not a naturally inclined social media star. What was your relationship with social media during your twenties? Eby: At the beginning of my twenties, Instagram was much more like, do you remember those extra-filtered pictures that we were all putting up? With the borders? That's what Instagram was. No one had stories. It wasn't very oversharing. And then I think it got more and more advanced later in my twenties, but I was normal on it. I was private just to my family and friends Johnson: After graduating from Lehigh University, Brooke worked in tech. She spent most of a decade bopping between coasts. Eby: And then when I turned 29, I was moving back to New York from San Francisco. And when I was in San Francisco, I started feeling tightness in my calf. But I thought it was like– when you're 29, you're so oblivious and naive– 'Oh, I just did too much Pilates. I'm that in-shape that my calf hurts.' Johnson: That symptom became harder to ignore on the streets of Manhattan. Eby: Pretty quickly you're walking slower in New York City because people are just bulldozing you. And I'm like, 'This feels funny.' But again, I just didn't pay attention to it. I ignored it really until some of my colleagues started pointing out that I was limping. Johnson: At first, Brooke talked to her sister, who's a doctor, to see if she had any idea of what was going on. Her sister thought maybe Brooke had a pinched nerve. Doctors outside of the family were just as flummoxed. Eby: We were all sort of delusional that I was perfectly healthy at 29, but that kind of kicked off like the whirlwind of the four year diagnosis process. Johnson: In 2022, Brooke started losing her balance more often, so she went back to the doctor. The weakness that had started in her left leg had moved to her, right. That was enough to confirm a diagnosis: ALS, neurodegenerative disease, commonly known as Lou Gehrig's disease After the Yankee's first baseman who was diagnosed with ALS at the peak of his sports career in 1939. (Lou Gehrig baseball clip): A fatal disease attacked baseball's iron man. 'I might have been given a bad break, but I've got an awful lot to live for.' Johnson: As ALS progresses, you lose the ability to make most voluntary movements like walking, chewing, swallowing, food, and eventually breathing. Patients are usually given a life expectancy of two to five years, although younger patients often live for longer. Sivertson: What was your knowledge of ALS before this, or what was your exposure to it? What did you know about it? Eby: I clearly knew nothing about it because I thought in my mind it was a genetic, mostly genetic, disease that affected older men and was super rare. Like those were the three things that I was pretty sure of going into it. And then I also was told it moved so fast that you know, in a matter of months you're like paralyzed, if not dead. And I'm like, 'Well, I've been dealing with this for four years, so I just don't get it.' I'm like a young woman with no genetic markers, like they even tested my genes and they came back clear. So I just was so wrong about everything. It turns out like 90 percent of cases are not genetic, so it didn't rule anything out there. It's not nearly as rare as I thought it was, and it affects anyone at any age, like it truly does not discriminate. So everything I thought I knew about it, was wrong. I remember the ice bucket challenge, but mostly because I didn't get nominated and I felt really unpopular. Sivertson: Remember the ice bucket challenge of 2014, Ben? Johnson: I remember the viral dump-a-bucket-of-ice-water-on-yourself-after-someone-nominates-you part, but I completely forgot that this was about raising money to cure ALS maybe because nobody tagged me. Sivertson: Well, nobody tagged Brooke either. Eby: I'm like, 'Man, I'm in no one's top three.' Gimme a break. Johnson: The initial few months after the diagnosis were rough. Eby: All I had been doing was like lying in bed and eating M&M's every day. It was a dark time, reading a lot of books. I think I was reading like a book a day to escape. I know my Goodreads was fire that year. It will never be that high again. Johnson: In between tearing through books, Brooke had to tell everyone she knew that she was dying, which made people uncomfortable Eby: Because no one knows what to say. Like I remember we were at the doctor, at the neurologist, and they were like, 'Well, with ALS you really need to focus on gaining weight. So like, eat whatever you want, eat as much as you want.' And my sister goes, 'You're so lucky.' I just remember immediately pulling out my phone and being like, 'We're gonna remember that one.' My poor sister, I use it all the time. She's the kindest one of our family, and I'm always throwing her under the bus with that story. Sivertson: Brooke started keeping a little note on her phone with some of the funny moments related to her diagnosis. Johnson: But she wasn't sure anyone else would see the humor in a situation that was also pretty bleak. So she kept the note private until a wedding where she was supposed to be a bridesmaid. Eby: I was like, 'You've got to be kidding me.' The bridesmaid dress barely fit me, because, again, the M&M's. Then I showed up with a walker. And as soon as I walked in, the bride's grandma showed up with the exact same walker. I looked down and I was like, 'Oh, she has tennis balls, too.' So we were kind of like, 'Heyyyy.' I turned to my friend and I was like, 'We're out of here. There's no way I'm going to walk down the aisle with this walker as a bridesmaid, no chance.' My friend, not the bride, I told her that in secret and she was like, 'It could be really embarrassing or we could just try to make it really fun, like you're gonna get a good story out of it. Just go for it.' We made it through the ceremony and then by the reception, I don't know if my embarrassment had worn off or if I just kind of forgot about it, but we had the best time on the dance floor. The bride was doing the limbo under my walker. People were hopping on for walker rides and I was like, 'Okay, everyone's laughing.' I'm way more comfortable because the prior two months I had just been having like tearful conversations telling people about my diagnosis and being like, 'All right, go. I ruined your day. Like, go enjoy.' And so this was the first time I'm like, 'All right, people aren't even asking me what's going on. They're just trying to have fun.' Johnson: When Brooke got home, she started going through the note on her phone, detailing all the funny moments since her diagnosis. The next day she had brunch with the same friend who cheered her up at the wedding, Jackie. Brooke showed Jackie the note on her phone. Eby: She was like, 'Brooke, you need to do something with this. This can't just live here.' I forced her to be in my first video because I'm like, 'If we are gonna be embarrassed, you're going down with me.' Johnson: The very first video is of Brooke and Jackie on a couch, pantomiming the conversation where Brooke discloses that she has a rare terminal illness. Brooke's head is in her hands. She's pretending to cry, but Jackie is smiling wide with deep dimples. The videos that follow are very vintage 2022 TikToks. Heavy on popular sounds like this one with the footage from the wedding that started it all. (TikTok clip from Eby's account): Don't be suspicious. Don't be suspicious. Don't be suspicious. Don't be suspicious. Johnson: That's played after a caption of Brooke saying she 'doesn't want to draw attention to her diagnosis,' while you see Brooke and her walker absolutely being the main characters on the dance floor. Sivertson: Brooke's terminal illness and her willingness to laugh about it were immediately the cornerstone of her shtick. She uploaded the videos under the handle @limpbroozkit. Johnson: Fred Durst, anyone? Limp Bizkit? No. Amory? No? Sivertson: I get it. Brooke had no idea if anyone would find her videos funny. Maybe they would just find them sad. Eby: That's why in my first couple of videos, I was always kind of nervous because I'm like, 'Should I be joking at a time like this? I don't know.' Johnson: That all makes total sense to me. And I also think humor has always been this way of dealing with darkness. Right? Eby: I agree. I think especially with COVID. During and post COVID life, the whole concept of meme culture, like we can make a joke out of absolutely anything. Like we're quick now. People just need humor, I think to process things. Johnson: Can you talk a little bit about when you started to realize that you were really gaining traction with the stuff that you were putting on the internet? Eby: When I first started seeing my follower count go up and all of that. It was probably my dating videos, early days when I was using a cane. Johnson: These videos feature screenshots of the texts she got from potential suitors. Sivertson: Things like, 'Can I borrow your cane? I feel myself falling.' Johnson: Or 'Okay, I see you Abraham Limping.' Sivertson: Next, Brooke started making videos about this medicine she was taking as part of a trial Johnson: Medicine that tasted really bad. Eby: So I did a taste testing series so people could suggest how to chase it or how to deal with it. Eby (clip from TikTok video): Pickle juice, shot glass. Oh, stench. Let's just do it. Let's just do it. It's no big deal. Eby: I think after those two, that was when I started seeing, 'Okay, people are remembering that they've seen me before and they were saying like, Brooke, blah, blah blah.' They remembered who I was, as opposed to it just being another swipe away video. But it is hard, I think, to still understand any sort of impact you make if it's just on the internet, because, I don't know, sometimes it feels like I'm playing The Sims. I see the number of people watching and I see all the comments, but it's strange because ultimately I'm talking to my phone and then I'm clicking a button and then I'm seeing little internet sims pop up as comments. I'm like, 'How is any of this real?' It's strange because everyone's like, 'You're so brave.' I'm actually just talking to myself in my room. Sivertson: Do you identify as an influencer? Do you think of yourself as an influencer? What's your relationship to that term? Eby: No. I don't really have one. The stuff that I influence on is much more niche. If you need adaptive clothing, I've got a recommendation, but it's not like everyone's going to go out and sell that out because it's not a need for most people. Johnson: That's what I was gonna ask, what are the products that you would influence on? Eby: Yeah, you should see the partnerships that reach out to me. I always crack up picturing my manager versus a normal person's manager, because she gets calls from the National Funeral Directors Association and I'm like, 'Sure, sure, sure. That's a perfect fit.' It's a very weird space to be in. Sivertson: So Brooke is definitely not a full-time influencer. She still works a nine to five job in tech with only the occasional funeral sponsored content. Eby (clip from TikTok video): Funeral directors help with every step of the end of life plan. They can document your wishes and understand the logistics. So if I wanna play Kesha's 'Die Young,' noted. Johnson: Unlike other viral creators, Brooke doesn't get a lot of hate online, but she does get comments that are pretty weird. Eby: Someone wrote me a message. This poor person because I don't even know who it was. It was some stranger, but she was like, 'Sometimes I feel like I have a death sentence because I've been single for so long.' Sivertson: Oh. Johnson: Wow. Eby: It's just like, in her heart, she's not trying to be mean to me. Johnson: Mm-hmm, right. There's also this layer of pity or sort of people being like, 'Oh, you make me feel thankful for every day because your life is so terrible, right?' Eby: Yeah. Johnson: What does that feel like for you to receive? Because you seem very open and non-judgmental in some ways, but also you can see the humor and ridiculousness of the way people act towards you. That's what I was trying to ask about, if that makes sense. Eby: Yeah, I actually had not even thought about that. Then someone messaged me once and they're like, 'Do you ever get sick of being the reason people want to be a better person?' And I'd never really thought about it, but once she said it, now I'm like, I do. It kind of is in the back of my head sometimes when I get comments like that, but they have to be phrased in a very specific way for it to be a little obnoxious. Most of the time, if someone's like, 'I wanna appreciate every day.' To me, that's a great comment. I'm like, good. If someone were to say, 'I should feel lucky because my life isn't as shitty as yours,' I don't think I would like that phrasing. But I don't know that people phrase it like that. I don't remember seeing that. At least I would say feedback is a gift. The feedback that I got, especially at the beginning was, 'You're making light of this' or 'You seem too happy.' And I think honestly, most of the people who are making those comments are probably ones who had a first row seat to someone living with this and are still feeling angry at the disease. At least that's the backstory I've given them because otherwise, what do they care? I think in my mind, I'm not reframing it. I just wasn't that progressed. It wasn't that hard at that point. And now that it's gotten worse, there's not going to be as many videos of me being like, 'Hey, this is no big deal.' It's just the nature of progression. So I'm just like 'Stay along for the ride and if you wanna see things get worse, you will with this disease. So stick around.' Johnson: Watching all of Brooke's videos in one day is kind of like reading a flip book of how ALS progresses. In the early videos, Brooke doesn't look that far off from, say, one of the famous beauty influencers like Alix Earle. She does her makeup and get-ready-with-me videos. Her shampoo-commercial hair always looks like she's just had a blowout. She lives alone in a cool apartment. Now she needs around the clock care, thus the difficult decision to move home. Sivertson: How would you describe your mobility right now? Eby: Like a ragdoll? Nothing really works. I can raise my hands, but they're claws now. I'm really not into the way they look. I can still type, especially on my phone. I can still type on the keyboard, a lot more typos these days. I can move my head and talk, but below the screen, it's a mess. Johnson: Before the TikTok band briefly went into effect in January, Brooke made a video about how it felt to go back and watch her own content from the beginning. Eby (clip from TikTok video): It's so surreal the amount that we've had to adapt. Three years ago, I was walking and now I can't do anything. I don't even feel emotions because it doesn't feel real. It feels like I'm playing a role in a movie and then someone's gonna finally yell, 'cut,' and I'm gonna just pop up outta my chair and go be normal again.' Eby: Day to day, I think it's easy for me to just rely on humor and staying busy to cope. But then in that video, I just looked back at all these videos from a year before, two years before, five years before. And I was like, 'Oh my God.' I did not realize, I knew how much it changed, but I don't know, seeing myself just a year ago versus today was startling. I don't think our brains are meant to compute the speed of change that comes with this disease. I made that video and I was thinking, 'This is not a relatable feeling at all.' I just feel like I'm an actress playing a role right now. This doesn't feel real. And people are like, 'No, that's called dissociation. That's very much a psychological term that most people go through.' And I was like, oh, okay. You can tell I'm not actively in therapy all the time. Sivertson: In your videos, you've been documenting all along the way, the progression of the disease and how it's changing your life day by day, implement by implementation that you're adding into your routine. But there will come a time when you can't verbalize anymore, when you can't use your voice and use your humor in the way that you use it now. Do you think you'll still be making videos? Have you thought about what the content creation process might be then? Eby: Yeah, there are some people who go the full progression while still having a voice, and I'm still delusional enough to think I'm gonna be one of them. Even though my voice is clearly getting weaker, I'm still not slurring, which makes me happy because I'm like, people can still understand me. But that said, I have voice banked. I do have my voice saved so I can use it in some sort of text-to-talk thing. That's a big thing in the ALS community. As soon as you get diagnosed, they start saving your voice. But, I think my intention is to keep going really as far as I can. I think the way it looks might be a little different. Rather than me talking a ton, it might be like my parents helping to talk or filming stuff. Or maybe it's just, not talking and I'm just putting music over something I'm doing. I think there's options. My goal is really to show everything, just because that's what I wish someone had done. I would love to see someone who's more progressed than I am, get into bed or stay asleep. Like how the hell do you stay asleep when you can't move and you get uncomfortable or something falls asleep? Those are the things that I don't want to watch a whole sad documentary just to glean insights of how to do things when I could just make a two minute video. It might not work next week, but it's working right now, so that's the goal. Man plans, God laughs. I think people say, but that's the plan for now. Sivertson: Brooke doesn't know exactly how much time she has. Maybe she has five years, maybe she has 10 years. Johnson: What she does know is that curing ALS, it's going to take more resources. Sivertson: Social media, whether it's the Ice Bucket Challenge or a TikTok or raising awareness, can build community around ALS, but it's not going to cure the disease. That takes research, which has a price tag. Eby (clip from TikTok video): Thank you for all of the thoughts and prayers. Now, have you considered money? Sivertson: Right now ALS researchers are facing proposed funding cuts by the Trump administration that could drastically slow down their efforts. So if you're a billionaire, says Brooke, maybe forget about rockets and Mars and take up funding ALS research as your cause. Eby: I feel like the other planets have already made it here, and we just haven't been told about it. So I'm like, why don't we just ask them what it's like before we go waste all our money going there. Johnson: On TikTok, Brooke is a one woman ice bucket challenge, raising awareness of ALS and what it's like to live with it. But going viral prompted her to start another online community, one that's more specific. Eby: So if you think about my last two and a half years after being diagnosed, I put myself in front of an audience, and because of that, I have access to so many more resources because I have 200,000 people willing to answer a question I have. If I were to post, 'I really need advice on the best toothbrush for weekends.' I could get a thousand messages back. Whereas someone who's not a psycho putting her life online, like a normal person living with this disease, they could go to their support group, and I don't know how fast they'll get a response. There's just not as immediate of answers as I've been able to get. So I kept thinking about that: How do I make it so everyone has this level of access and this level of immediacy? And then I flashed back to when I first got diagnosed, they give you this godforsaken packet, it's like an encyclopedia size, and it's just pamphlet after pamphlet of resources. You've just gotten diagnosed, they tell you you have two to five years, it could be less than that and you're gonna lose every ability until that point. You go home and your brain is just scrambled and you're also like, am I gonna be paralyzed tomorrow? Like you just start thinking in terms of speed, everything moves so fast, and yet the resources they give you are in a folder with paper that none of us has used since elementary school. I'm like, if this disease moves fast, like why are we still treating it like we're in the nineties? We gotta do better than this. Johnson: Brooke's day job is at the tech company, Salesforce. She worked with some of her colleagues there to create a channel on the professional group messaging app Slack. It is specifically for ALS patients and their caregivers, and it's called Brooke says it's really special to her because it's a rare space where people are going through similar challenges. Eby: Even when I'm talking to my best friends in the world, who I've known since we were four years old, I could tell her anything, but right now, she's about to have her second baby at the same time where I'm learning how to use a ceiling lift to get me into the shower. Like we lead two very different lives. I think it's probably the same way that moms feel after they have a baby, where they're like, 'I could complain to my friends, but unless they have a newborn too, they don't get it.' That's probably how everyone feels about something in their life. It's just good to see other people, whether they live near you or look like you going through the same thing. Because you're like, 'Okay, I'm normal in this group.' Johnson: If you have an untold history, an unsolved mystery, or other wild story from the internet that you want us to tell, hit us up at endlessthread@ Leung: Thanks for listening to this episode of 'Endless Thread.' If you want to hear more, follow 'Endless Thread' on Apple Podcasts, Spotify, or wherever you listen. And make sure you're following 'Say More' while you're at it. Kara Mihm of the Globe staff contributed to this report. Shirley Leung is a Business columnist. She can be reached at
